The good and the bad

With the weather being so nice the last few days we have come home and gone straight outside to play. It is amazing how much happier every one in our family is having quality family time on the porch. This includes the dogs. It has been so much fun having a child that is old enough to enjoy it with us. This is how Jason and I always pictured ourselves once we had a child.

Now to my title...Most of this post is good. I only have one BAD yet funny at the same time.

Lately, Kaylie has started making 2 word phrases with some of the words she is really good at saying. So far she has said...You tell me....do you think she is a daddy's girl?

*mommy/daddy (combined)
* daddy swing
* daddy swing me
* night daddy

The other thing she is getting good at is role playing. We were sitting outside and I watched her as she turned her babies on there bellies, patted there backs and told them night night. Where does she get that from? I laughed!

Recently, we taught her how to help us feed the dogs. Her role is to pick up the bowls, bring them to us, wait until we put the food in and then take it back to Bailey's spot for the dog to inhale. Now Kaylie takes it upon herself (even when they have just finished eating) to pick the bowls up, open the closet, take out the scoop and try to feed the dogs on her own. You have to watch her. She is sneaky. No wonder Bailey has grown to like her!

THE BAD
Kaylie walked over to a pile of poop in the yard and picked it up. I saw her bend over and pick something up and drop it. I freaked, grabbed her and ran her to the bathroom to wash up. I did not put her back down until she had washed her hands several times. Oops!

Brain Overload

This past week and a half has been full of doctors appointments for Kaylie all of which were specialists. The great thing about specialists is you are paying them more to see your child in turn they give you the time you need to answer all your questions. When you leave you as if you are so much more informed and some what comforted by what they have to say. Sometimes I hear so much new info. I am shocked that I can remember it all.

Here is a quick (as quick as I can make it) recap of her appointments:

GI doctor
He was excited to see her weight. He said before he felt she absolutely needed the G-button. Now he said he is on the fence but is ok waiting to see what she might do. She has already lost 6 oz. in the past 2 weeks but is still up enough to wait. We are hoping that during the summer she will be healthy and grow.

Immunologist
Dallas is blessed with a hospital that specializes in pediatrics. Even though we already have an immunologist (ours sees children and adults) we were encouraged by her pulmonologist to try a new one that deals with only children. He felt that the new one would give us a more specialized approach to dealing with her low immunity. Since I love him we switched. My only complaint was that the appt. was from 10:30-2:00. The good thing was that I learned so much more from her than I did from the other doctor we had been seeing.

Up until now I did not understand why a preemie is more susceptible to low immunity. She explained that a baby does not get the mother's immunity until 35 wks. in utero so unlike a term baby that has some help at birth a preemie has to do it by themselves from the get go. It is not until a few months later (I think she said 8 months) that a term baby begins to drop the mother's immunity and us there own. By then they have hopefully built up their own. In Kaylie's case she is laking in some. Now that we know that we can try to help her out.

This doctor was incredibly optimistic. She said every one's immunity is constantly changing. Because of that Kaylie will require regular monitoring until hopefully around the age of 10ish. That is so much better than what the other doctor told us.

As of now...The doctor is checking her blood to see if she is responding to the vaccines she has been getting up until now. She explained the reason children have to get a vaccine 4 different times before the body realizes it is important. Unfortunately Kaylie has not responded to the Previnar vaccine (deals with respiratory stuff) and possibly the HIB vaccine. We will now that for sure after we get her blood work back. Once we find out about HIB we will go in and get boosters. That means we will get and extra previnar shot and HIB shot at her 2 year appt. A month from that day we will get more blood work done to see if her body has responded to the additional "boost." Most likely her body will not so than we do it again. We will continue this process as long as we need to make her body recognize the importance of having this vaccine in her body. If nothing changes in a few years she will be diagnosed as being IGA deficient. Until then she is just IGA low.

Her final words to me was that she felt like she would over come this. Woo Hoo!!!

ENT
Today we saw her ENT for follow up on her ear tubes. When she was born she did not turn to sound. It took me complaining about it for a good 8 months for anyone to do anything about it. With that and her chronic ear infections we were sent to an ENT. He confirmed that she had fluid behind her ears and could only hear things at times. At 10 months she got tubes. Since this is incredibly early for a child to get them and she was so little at that time he told us she would most likely need them again. Thankfully, they have stayed in up to this point and we have only had 3 ear infections in over a year that have pretty much taken care of themselves.

My main concern for today's appointment was to talk to him about her adenoids. I have had some concerns about her chronic sinus issues, respiratory issues, and runny nose. After the pulmonologist brought it up I felt better about talking to the ENT about it. I brought it up and he didn't even hesitate. He agrees 100% because the adenoids are a breeding ground for infection. He told me Kaylie has many of the reasons that they would take them out and she is a good age for t. Their are so many pluses and very few minuses to having them out. Even though he doesn't think it will fix every thing he feels it will help. The procedure will be a day surgery and the recovery should not bee too bad. He said he will go ahead and replace her tubes now instead of waiting to see when they will fall out so that we do not end up having to come back a few months later because they fell out. We will probablydo all of this in a few weeks.

Kaylie has been in love with all of her baby dolls and now her doggy. She has to sleep with 2 babies and her dog. To leave she has to have at least on baby. It makes me happy to see her attach to something. During her appts. she will hold onto them for comfort. It makes my heart melt.

She has finally figured out how to work the bubble dog. After her 4 hr. appt. we were both exhausted so we decided to sit on the porch to play. I watched as she sat in her own chair with the bubble dog shooting out bubbles, laughing as Bailey tried to get the bubbles. My little girl is growing up way too fast!

Kaylie and her daddy have a special bond. This is of the two of them doing the "fist bump." Love it!

Easter Pics

This Easter was a heck of a lot different than last year. Last year Kaylie was new to the whole sitting up independently thing and could absolutely care less about getting any eggs. This year it was every baby for themselves. She was running from egg to egg and putting them in her basket. The funny thing was that her basket was half as big as she was. I was nervous she wouldn't want to hold her basket but after a minute or two of her running with it I had flash backs to her pumpkin holder from Halloween. She still plays with that.

After we had found all of the eggs Kaylie spent a good 30 minutes opening and closing her eggs. It is adorable how easily amused my child is. I am not complaining! After this adventure we went to see Kaylie's boyfriend. She and Fletcher had a blast looking for eggs. Kaylie kept trying to steal his basket. Do you know how hard it is to get two kids to take a picture together? I do not know how people do it!

Woo Hoo!

I promise...no matter what...I will never be on of those who posts pictures of my child on the potty. Instead, I will just tell you about it. Yesterday Kaylie got out of her bath, walked over to her potty, sat down and went to the bathroom all by herself. We thought she had been doing her normal stand up sit down play time until she stuck her hand inside and shook off something wet. Jason and I were shocked! Way to go little girl. We are so proud of you! This made us realize we needed to make sure daycare was taking her on a more "regular" basis.

Since I refuse to post pictures of her on the potty I decided to post a random picture that has nothing to do with it. Here is a picture drinking by herself in her new chair. She loves chairs and can fly up into one before you have a chance to sit down. If she beats you you are better off on the floor because she doesn't give up her spot without a good fight.

Lots of stuff!

This week has been filled with a lot of medical info for Kaylie from tests that had been recently done. At this point I can say I know a lot of stuff that at times I wish I was clueless about. Overall, I would have to say the results have been good and some what informative. I feel like we have a piece of the puzzle secured into place. Surprisingly, this piece may actually be a large piece of it.

Last Friday Kaylie had her blood taken to check her immunity levels as well as to check for some genetic disorders. The lab work for the immuntiy came back rather quickly. This is the second round of testing. The first was to determine baseline levels. During that her IGG and her IGA were low. Your IGG are your first line of defense and your IGA's are your third. On this second round her IGG's had gone back to normal but her IGA's had gone down from where they were originally. Since IGG's are about 80% of your body it is good that they went up. If both were still low Kaylie would be in great danger of having serious illnesses throughout her life. Instead, she just has to deal with the fact that her IGA's are low.

These antibodies are 10 to 15% of your body and deal with the respiratory and GI tracts. When I read that I about flipped. This explains so much!!!! Now we have an explanation for why she had chronic ear infections at such an early age and why we can never get over a cold without strong antibiotics.

The other thing I found interesting was the strep pneumonia levels. These levels should have gone up since her last visit. Every time she gets a respiratory infection these levels should go up and you should become more immune to things. Right now her body seems to not acknowledge it making her levels be at what a newborn would be. He suggests that at her two year well baby we get the pneumonia shot. Without this she will continue to be at an increased risk for ear infections, sinus and respiratory infections. Pneumonia is not as much of a concern unless we let it go without using the cabinet full of meds that we have to help with this. Once we get the shot he wants to recheck her levels a month later to see if her body has responded to it. It is quite possible her body will not respond and the results will be the same. If that is the case we have to be even more aware of illness.

So what now...Basically we will have to be careful. For the most part we have not be overly paranoid unless it is obvious someone is sick. I am a freak about open mouthed coughing but being a teacher you are a little more aware of germs. Even though I cringe every time a kid coughs on Kaylie I refuse to make her a bubble girl.

In regards to medication most of what we are doing will remain the same. He and I discussed the daily antibiotic (pro biotic) she should be taking (when she is not on one due to illness) and decided to hold off during the summer. She did not handle this last one very well and I would like to see her body have a break. The other thing is that he feels we need to be somewhat liberal with antibiotics as well as quicker to act when an illness appears. He said we will most likely need an antibiotic to fight any thing she gets. Thank goodness we had a second year of RSV shots.

I asked him if this could last her entire life and he said most likely. His hope is that her body will start to pick and choose what gets her sick possibly ignoring the small illnesses allowing her to get a break. Right now she gets sick, takes an antibiotic and two days after it is finished gets sick again. With school about to be over I pray her body gets a well needed break.

Sleep study: Came back fine.

As Kaylie approaches her two year birthday it has been hard for us to see what she is going through. When your baby looks like every other child around it is difficult to understand and accept the things she is experiencing. Our hearts broke the other day as we watched a one year old child inhale her birthday cake. We so badly want an easy life for here. Don't get me wrong...I am not saying everyone else's life is easy and our lives are hard. I am saying that I would like for her to be able to go through a day without coughing, sneezing, gagging, throwing up, and/or taking a cabinet full of medications. I would like a day where I do not fear what illness she will get next and how that will affect her feeds. I want a day where she can walk into a doctors office and smile instead of scream before she even enters an exam room. I say all these things knowing that even with all of this we are incredibly blessed to have her. It blows me away that God loved Jason and I so much he allowed her to come home to live with us even after being born 3 months early. I don't complain often because I know how things could have turned out but this last week has really been weighing me down. I am hoping with this new information we can move forward knowing what we need to do for her.

After Kaylie's hospital stay, drastic weight loss, and constant illnesses Jason and I made an important decision. This year will be my last year teaching for awhile. I have been stressing about this decision for awhile but after getting this information this afternoon we know this is what is right for our family. As of June I will officially be a stay at home mom. I am overjoyed yet terrified all at the same time. I love my child and can't wait to spend quality time together. Right now a lot of our time is spent in therapy and doctors appointment. I pick her up from daycare, we go to our appointment, go home and then have to sit through a 25 minute feed that at times can be quite stressful for both people involved before going to bed. Now we can have more fun times mixed in with the not so fun times. What I fear is not having enough interaction with adults. I will have to use my resources to find ways to cheaply stay busy.

Thanks for listening to my emotional moment. Sometimes all of the information can be a little much for two people to handle. I have had so much on my mind this last week it has been hard to function. Please pray that we are on the road to figuring things out.

PPITP

PPITP stands for.....


Kaylie went PEE PEE IN THE POTTY!!!!!!! We are not full force potty training but we are working on getting her comfortable on it. She has really shown an interest in it so we decided to ask daycare to help us out with it. In her room over half are either trained or working on it so we figured why not. I think her teacher thought I was crazy but agreed to it. Kaylie is the youngest in the room (corrected) so I understood. Today was the first time they tried it and I happened to walk in right when she was putting her on it. I did not want to distract Kaylie so I waited outside but could still hear what was happening. The next thing I hear was her teacher asking if she had just gone in the potty. She picks her up and says it again. Excited I quickly ask myself. Needless to say...our first potty experience at daycare was a success. Mrs. Katrina thinks we may have started something. Woo Hoo! Go Kaylie Marie. We will most likely hit potty training in full force over the summer. Until then we will keep trying.

Shi...na

Within the past week or so Kaylie has gotten good at saying Shiner's name. To some degree I would have to say she is some what obsessed with saying it. The amount of effort she puts into saying his name makes us laugh.

Here is a video of us on the porch from a few days ago. She loves Bailey but is more drawn to Shiner. At times she decide Shiner needs a toy or a bone, walk by Bailey, and give it to Shiner. If Shiner does not want it she gets louder and more demanding. She definitely has developed quite a personality.

I included this video more for our family to see how much better she is talking. Kaylie is incredibly shy and takes a long time to start being herself. Usually she starts to get comfortable right before it is time to go.